What do I ask the gastro doc?

[tex]

Hi Celie,

You've already received a flood of great information, so I only have a few minor details to bring up, and bear in mind that this is only my opinion, and I am not a doctor:

1. If your symptoms are effectively controlled by taking only 6 mg of Entocort EC daily, then there is no point in taking more - more can only increase the risk of side effects, without additional benefits, because as Gloria has already pointed out, Entocort only suppresses the symptoms - it does not prevent the inflammation from being generated in the first place, (only diet changes can prevent additional inflammation), and therefore, it cannot actually heal the gut. Experience here has shown that most people with MC typically require at least 6 months to a year on the starting dose of Entocort, before they can "safely" taper down the dose, and eventually wean off it completely, (without suffering a relapse). Everyone's response to various drugs is somewhat different, though, so YMMV.

2. You might "feel out" your doctor on her thoughts about Enterolab, before asking her to order tests for you from their lab. If I were in your shoes, I would start by pointing out that what you eat, seems to have a definite effect on your symptoms, (and eventually work the conversation around to stool tests). Some doctors have a favorable view of internet or local support boards, while others seem to hate them with a passion, (they view them as "competition", I suppose). If she seems to be receptive, you might mention that you belong to an internet support board where many of the members have had extremely good results from the tests offered by Enterolab. Some doctors are quite hostile about stool tests, having been "burned" by worthless results from other labs offering invalid stool tests, in the past, so stool tests in general, have sort of a poor reputation, by default, in the minds of many GI docs. And, "internet" labs, are especially viewed with suspicion by most docs, even though all of the prominent labs that they use, also have web sites. Doh! Anyway, if she is willing to order them for you, then there is a much better chance that your insurance will pay for the tests. Hundreds of thousands of satisfied customers have proven that the tests offered by Enterolab are extremely accurate and reliable, (the celiac discussion boards are full of people who have found resolution of their symptoms through Enterolab's tests). These tests are several orders of magnitude more accurate and reliable than the conventional blood tests, for detecting food sensitivities, but the medical community is slow to wake up to them, due to negative experiences with other labs in the past. If she won't order them for you, there is still a chance that you might get insurance coverage. Enterolab can provide the appropriate description numbers for the individual tests, that are used by the insurance industry, (I forget the proper name for them, at the moment), so that you can use those identifying numbers to inquire if your insurance will cover the tests.

3. As Ant mentioned, fiber is definitely contraindicated for MC, so it needs to be minimized in your diet, in order to prevent it from irritating the mucosa of your intestines, since that can retard healing. Fiber does not cause an autoimmune reaction, the way that gluten, casein, soy, etc., does, but it irritates the gut, (which is already hypersensitive, due to the inflammation), by it's generally abrasive texture.

4. Your doctor may have to learn how to treat this disease, right along with you, but if she is willing to listen to you, and work with you, she can be a great asset. If she refuses to accept, (or even consider), the fact that diet is connected with the symptoms of MC, (which sadly, is still the case with many GI docs these days), then she may not be able to provide much help, but if she is at least willing to renew the script for Entocort for a long enough period, (until your intestines have healed sufficiently that the diet alone can handle the job), then you can do the rest on your own.

5. You can find several hundred excellent recipes, that are free of gluten, dairy, and soy ingredients, here:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Dee is a professional chef, who also has MC.

Best of luck on your appointment with your doctor,
Tex

[Celie]

Thank you Tex,
The diarrhea goes away completely with the Entocort. I even get a little constipated on 6 mg of Entocort. I am grateful that it works so well. When all this started, I was on a high fiber diet, but have been on a low residue diet since about the first of June. I can't tell that it made any difference at all. I am ready to go gluten free and am studying up. I do want to talk to the doc first. But, I am going to try it either way. I want to find a way to get better.

I went for a long time without a diagnosis. When the D started, my regular doc did a CT scan and said "no colitis." She said that I was just nervous because my son was getting married. I told her that I was very happy about the wedding and my response to stress had never been digestive. She gave me prednisone to help me feel better for the wedding and it gave me some relief. It did not get better after the wedding either, but I had a big cancer scare and surgery, but getting over that did not help either. And, like others on this board, I got sicker and sicker. She finally called in a gastro doc who did the biopsy of my colon the 6th of July.

I look forward to taking control of my gut. I am very frustrated. One thing I am trying to decide is whether to just go GF or all the way to SCD.

[grannyh]

Glad you have been able to take entocort successfully! It has given me my life back.

When I read the title of this thread I laughed and thought.. I know my first question.. after seeing a gazillion doctors and spending gobs of money for everything but the right diagnosis.. my first question became.... "How many patients do you have with collagenous colitis". None of the doctors had even one patient with it! That is until I found my current GI doc.. he said he had about a dozen patients with either MC or CC. I knew I was in the right place when he gave me alternatives from diet to asacol to entocort to.. well names of drugs with very long names...LOL

Hope you continue to improve.
grannyh

[Celie]

I am thankful for the Entocort. How long have you taken it?

The question about other patients is a good one. I had thought about it once, but did not have it on my list. I just added it.

Celie

[grannyh]

I have been on entocort for about 5 years. Stayed on three pills a day for a couple of years wondering if I would ever get to one a day..but I finally made it. My prescription is for 3 a day as I do need 3 a day once in awhile.. but not very often.
grannyh

[Linda in BC]

Welcome, Celie:

You have come to the right place for information on LC!!!

Most doctors hve been taught that diet or food intolerances are not a cause in MC, but most peple on here have found that their condition improves dramatically when they cut out certain foods (usually wheat, soy and casein (the protein in milk.) There is lots of good info on the web on hidden sources of these things in foods. Also eating very simply, mainly well -cooked chicken, pork or beef ( although some find beef not so good) rice, a few well cooked vegies and avoiding fiber, ilke salads, nuts, fruit and raw vegetables, at least for a while until the gut heals.

Good luck with your vist with the Gastro Doc.

Linda

[Gabes-Apg]

I agree with Granny

First question - have you treated anyone with MC if answer is no
second question - have you heard of MC


i went to a new GP last week. (the existing one was always too busy and was never available to give me blood test results unless I made an appointment, they never had appointments available when I could get there)

Thanks to my discussion with Peta lon this site ast week it pushed me to fix this issue for myself, so i did some research and found a 'wholistic' GP who focusses on womens health, digestion issues, nutrition and environmental medicine.

Anyways, i arrived, i had typed out my medical history from childhood to now, this included a summary of what MC is (thanks to Polly and the newbie section of this website) and gave a brief description of what i can eat, what i cant eat

she wrote some notes and then asked

Ok - you have had a journey and a half so far, you seem confident with your diet treatment regime etc, why are you here?

i told her that i need GP support to monitor nutrients levels and general health, given my limited ingredient diet and the susceptibilities with this condition such as bone density etc

she was really good, she offered some suggestions that were straight out of the IBS treatment handbook. we talked about the lifestyle changes ie the impact of the restrictive diet

She asked me where i had got my information from and i mentioned this site and the wealth of knowledge available

She agreed that with a condition like this self management is good as no doctor could understand all the anomolies and indiosyncracies. as long as the patient is having regular contact with a practioner they trust

i asked her if she wanted me to go fill out the forms for her to obtain copies of previous doctors visits etc and she said no, she couldnt imagine anyone making up a condition where they have to totally change their diet and lifestyle.

She also agreed that when looking at the results of tests, seeing where i fall within the range is important, as is tracking the results over the longer period.

i think it is important to have a clear idea what you want from the appointment, like Naty said have your list of questions with you, take your time to write down the answers or key words, dont feel pressured to rush.

as LInda and others have said, not many specialists will encouage diet as the main management tool and their basis will be , that there is no medical proof it works.
doctors are in the mind set, patient comes to them with a symptom, write a script and make the symptom go away. this is not healing the body or treating the cause.

there is a classic management saying along the lines of - if you want to win, you have to have a winning team that have a winning attitude

[Celie]

Good suggestions Gabes,
I have seen this GI doc only twice before. I am about to find out how well she will work with me. I am hopeful. The clinic is the biggest GI clinic ion our state and I saw three of their docs while I was in the hospital. The first one I saw called the condition before they did the biopsy. He said he was almost sure it was MC. He thought it would be CC but it was LC. So, I know they have seen it. If she won't work with me, I will find someone who will. But, I hope I won't have to doctor shop.

We will see how it goes tomorrow!

[tex]

not many specialists will encouage diet as the main management tool and their basis will be , that there is no medical proof it works.

You know, it's mighty interesting that they can always remember that fact, but they can never remember the fact that there is also no medical proof that it does not work. That's known as "selective" memory.

The first one I saw called the condition before they did the biopsy. He said he was almost sure it was MC.

That's very encouraging, because that definitely ups the odds that the group as a whole is acquainted with the disease.

Tex